Monday, August 21, 2017
Narcolepsy? What else can I do?
I`ve been diagnosed with `IH, probable N w/o C`, by my doctor. Though I`m doing much better on daily nuvigil I am still a little confused about the whole thing.
In hindsight I think I`ve had some symptoms since I was a child. I`ve always remembered my dreams, had what I know now to be HH, still have SP, walked in my sleep as a child, always have mildly acted out some dreams, talk in my sleep, dream during naps, and was suprised to learn about 15 yrs ago that the moving and funny leg feelings are a `medical diagnosis`... RLS/PLMD. I never knew any of it was abnormal or sought treatment. I could also fall asleep anytime, anywhere, if I wanted to. Thanks to long bus rides and study hall I had regular naps and some pretty good dreams.
Around age 20 I began to have problems with "depression." I never felt depressed but when feeling sleepy started to interfere with life I saw a doctor. Over the years, I tried a couple of anti-depressants with not much improvement. I did notice once when I used wellbutrin to quit smoking that I felt better but eventually stopped due to the cost.
Not being a stressed or depressed person I stopped complaining about feeling sleepy. Every time I did I would get another thyroid test (normal) and then another suggestion to start an antidepressant. So I just dealt with it.
In my late 20`s, I really started to have problems. Eventually, I was falling asleep several times a day. I stopped driving. I worried I would lose my job or hurt someone so I went back to the doctor. I got a huge workup over the span of a few years, saw a hematologist and endocrinologist, and started to think I was crazy because everything was normal. My doc put me on provigil and it helped for a short time. Then I was back to the office again, feeling like `one of those patients`. My sleep scale was 20 while taking medicine.
Eventually I had a neuro referral and a sleep study. The sleep study was ordered because I had gained 60lbs- sleeping all the time I suppose- and for RLS. How I gained the weight is a mystery... I didn`t eat much. The sleep study was done while I was taking 400mg of provigil daily. Sleep latency 5 minutes, REM latency 40 minutes. Fragmented sleep with decreased stage 3/4, random REM, and a final impression of `consider narcolepsy`. No apnea. Mild RLS. I still remember what I dreamed that night. I thought THEY were crazy then, to suggest narcolepsy. That when I learned all the dreaming and other things I`ve always had are not normal. Other then cataplexy and EDS, I`ve had so many other symptoms that go along with narcolepsy forever. Is that possible? Everything I read suggests it all happens at once... one month you`re normal, the next month you`re narcoleptic.
The neuro is all about my not having cataplexy, and to an extent I agree. The closest thing I have is sleep attacks, with dropping things, crossed eyes, crooked walk, and slurred speech. I`ve never passed out in my life.
Now I`m on the new provigil which is working fairly well. I still have random bad days though, which is frustrating since I work full time and love my job. Not to mention the effect on my family. I used to be very independent.... I put myself through college, I`ve had a job since I was 14, and moved out and supported myself as soon as I turned 18. It`s very frustrating now to have my best days be only 75% of what they were before. I have good sleep hygeine, I eat a healthy diet, and now that I don`t sleep so much I`ve lost 50 pounds.
I have read about xyrem, and it scares me a little bit. What if the house caught on fire? If the kids get sick? Will I develop full-blown cataplexy? I have a job that has no room for error.
I guess I really don`t have a specific question.... just more of a general "Where do I go from here?" Is there anything else I can do to help? The vague dignosis makes me feel like a hypochondriac at times. Should I see a psychiatrist? I truly don`t think I have mental problems but I`m willing to try if it`ll help. Even when I`m awake, I don`t always feel motivated. It sounds crazy, but I swear that time passes differently for me now- I find myself wondering at bedtime- Where did the day go? Somehow I`ll spend the whole day awake but I feel like I slept through it since it goes by so fast. I have five alarm clocks, plus a `you better be getting in the car now so you won`t be late` alarm, yet I`m still late.
Any enlightenment would be greatly appreciated!! Again, I`m not depressed but I am getting fairly frustrated... I have this thing and I know nothing about it! My neuro said I could stop the medicine for a few weeks and repeat the sleep test with a nap test as well but I can`t check out of life for a few weeks. Insurance wouldn`t pay for the first test and I can`t afford to take the time off and pay for another one right now. I could save up for a few years with a HSA though if it would help.
Thanks again :)
That’s quite a story! It sounds as though you’ve been through quite a bit and you are right to seek help. I think the first step at this point would be to get an accurate diagnosis.
The diagnosis of narcolepsy, which is certainly possible in your case, is usually determined by a Sleep Specialist after taking a thorough history, performing an examination, and obtaining objective testing - a sleep study and a daytime nap study (known as a Multiple Sleep Latency Study or MSLT). The sleep study and MSLT must follow a very strict protocol in order to make sure that the findings are consistent with narcolepsy and are not the result of another primary sleep disorder. This is what your Neurologist appears to be suggesting. Usually, individuals should be taken off certain medications that could affect alertness and/or rapid eye movement (REM or dream) sleep for 2 weeks before the sleep study and MSLT. Otherwise, the results may be inaccurate. It might be a good idea to try and make room for this in your schedule (i.e. maybe after at the end of a vacation during which you can be off your medications). There is no reason that insurance should deny this important testing and your doctor should advocate on your behalf to make sure it is covered.
Without knowing your true diagnosis, it would be difficult to offer treatment advice. However, let’s assume that you do have narcolepsy, since most of your questions are geared towards this, and discuss this condition.
Narcolepsy affects about 1 in 2,000 people. Narcolepsy is characterized by excessive sleepiness and abnormal intrusions of rapid eye movement (REM) sleep phenomena into awake time. Typically, during REM sleep, our muscles are inactive (except for our breathing muscles and eye muscles) and unable to move. In individuals with narcolepsy, this "paralysis" of muscles may occur during wakefulness (known as cataplexy, usually brought on by strong emotions) or during transitions between sleep and wakefulness (sleep paralysis). During cataplexy, it is not necessary for you to fall asleep during an episode. Dreams may also intrude during cataplexy or sleep-wake transitions – this is known as hypnagogic or hypnopompic hallucinations. Other symptoms of narcolepsy may include poor nighttime sleep and automatic behaviors (performing tasks without being aware of what you are doing or having recall of having done it). The symptoms of narcolepsy are variable across individuals with the diagnosis and the onset of the symptoms may be spread out over time (i.e. development of sleepiness years before the sleep-related hallucinations start). Furthermore, many individuals with narcolepsy who do not have cataplexy do not necessarily develop it over time.
If we accept that your diagnosis is narcolepsy, then there are several available options that are FDA-approved to help control the excessive daytime sleepiness. The traditional treatment has been with stimulant medications, as you taking. There are a number of these that are available and FDA-approved, including caffeine, modafinil (i.e. Provigil and it’s R-isomer armodafenil or Nuvigil), methylphenidate (i.e. Ritalin), and dextroamphetamine (i.e. Dexedrine). Adderall is a mixture of amphetamines similar to Dexedrine. Sometimes, a combination of stimulants is needed to provide adequate control of the symptoms and this could be the case in someone like you. Aside from stimulants, a newer non-stimulant medication, Sodium Oxybate (i.e. Xyrem) is also approved for the treatment of cataplexy as well as excessive sleepiness related to narcolepsy. Sodium Oxybate can be used in combination with stimulants and may improve the sleep and reduce the sleepiness in some narcoleptic patients. While it can decrease the level consciousness, most individuals taking this medication for the treatment of narcolepsy tolerate it fairly well.
In addition to medications, simple maneuvers, such as practicing good sleep hygiene and scheduled regular naps may help tremendously. Along these lines, it is important for those with narcolepsy to avoid situations that may worsen their symptoms - such as doing shift work, having a job that requires night-time calls, or any job that requires continuous attention for long periods of time without breaks. Most patients can have their symptoms almost completely controlled with a combination of medications and behavioral modifications.
It would probably be worthwhile having your entire history, exam, and test results reviewed by a Sleep Specialist that has expertise in the care of narcolepsy patients. You could ask your present Sleep Physician to look into this and locate someone near you to help expedite the process.
To learn more about narcolepsy or other sleep disorders, please visit the American Academy of Sleep Medicine website. In addition to information, the website contains a list of Sleep Centers across the country so that you may locate one near you. The Narcolepsy Network website, also provides information and links to support groups for those with this condition. Again, though I stress it’s important for you to make sure you get an accurate diagnosis before assuming this all narcolepsy.
Good luck and here's to good sleep!
Dennis Auckley, MD
Associate Professor of Medicine
School of Medicine
Case Western Reserve University